Wednesday, December 31, 2008

Daddy's Girl For Daddy's Birthday

Gracie had a very rough night. I think the Prednisolone is messing with her stomach. She was up at 11:30 p.m. and 2:30 a.m. for a bottle. She tossed, turned, and moaned all night long. She awoke at 4:00 a.m. and literally screamed while I changed her diaper. I walked and rocked with her til about 5:30 a.m. and then fell asleep until 6:45 a.m. She awoke in a good mood and had a very good morning.

Yesterday anytime Jeff would come near her she would fuss and fidget. It was like she was scared he would take her from mommy. He couldn't even get up from a chair and she would start to fuss. Well today she must have realized that it was daddy's special day -- his birthday. She was daddy's girl big time this morning. Daddy could do no wrong and she did not want him out of her sight. For the first time ever (or at least a long time), I went to take her from him and she didn't want to come.

Gracie had a very rough afternoon and evening. The only thing she wanted to do was be held and bounced. She moans alot these days too, it just breaks my heart. It seems like the second and third dose of Prednisolone just make her not feel good at all. Even watching TV isn't comforting for her and that is usually a distraction she enjoys. As for spasms, the only ones we are seeing are during her morning nap, she'll have one or two really light ones. As I mentioned in an earlier blog entry, we're not even sure that they are spasms as they usually don't occur during sleep.

Wishing you all a very safe and healthy New Year! I don't think our household will stay up to bring in the New Year. We'll be happy to greet it in the morning.

Lisa, Jeff, and Gracie

Tuesday, December 30, 2008

Gracie is 17 Months Old Today

Gracie turned 17 months old today. Hard to believe she is almost a year and a half old. Where did the time go?

Gracie once again had a two bottle night. She just can't seem to get through the night without sustenance. Gracie had a very good morning. She was happy and active. We went to visit daycare for a little while and she was very excited to see Barb and Michelle.

She took a good nap this afternoon but awoke still very tired and that is how she remained the rest of the day. She was tired, needed to be held and bounced. I wasn't sure if her tummy was bothering her, or something else. She had moments where we would get a smile, but you had to work for them. She was pretty much mommy's girl tonight. The word of the day today was "mama". Not sure if she was referring to me, but she walked around the house this morning saying "mama". It's usually "dada" so she's mixing it up a bit. :)

As for spasms, we just had one at morning nap time again. I can tell when it is coming, she gets fidgety and then it's just a light spasm.

I know we still have alot of prayers coming our way and we really appreciate them -- we can't say thank you enough. I know many of you have struggles and health issues as well. You are in our prayers as well.

Lisa, Jeff, and Gracie

Monday, December 29, 2008

GREAT Day!!!!

It was a two bottle night last night. Gracie got up at 1:30 a.m. and 4:10 a.m. and was starving. The steroids at work. She awoke in a great mood and remained that way ALL day. She was happy and smiley and walked everywhere and got into lots of trouble. Mommy has to watch her like a hawk as she has a great love for the waste basket, the stove, and the dishwasher. She can also reach the table and countertops and likes to grab anything in arms length. Her G.I. issues seemed to be much better today even though it was an antibiotic day. Thank heavens for Miralax! Gracie took a nap on the floor in her bedroom this afternoon. Usually she just crawls out when she wakes up and greets us. Today I was working in the kitchen, I look over in the living room and there was Gracie walking out from her nap today. I'm not sure where she pulled herself up, but she was all smiles.

I talked with Gracie's pediatric neurologist today and she is very encouraged by Gracie's progress and lack of spasms. We talked about the spasm(s) she has every morning during nap time and how I'm not quite sure if it is one or not. Since it happens during sleep, she is not convinced that it is an actual spasm either. She is also encouraged by Gracie's continued progress with her motor skills. So the plan is for Gracie to have another EEG on Monday and then we meet with her neurologist directly following that. That will tell us if we truly have things under control. If we do, we will slowly begin to back off the meds. This will more than likely be a 6 - 8 week process. Then we watch very closely as infantile spasms can sometimes return. We'll hope and pray that is not the case with little Miss Grace.

Auntie Sheila and Cousins Kayla and Jason stopped by today for a visit. Gracie loved the attention and had an abundance of smiles and goofy looks for them. They especially enjoyed Gracie's keen sense in knowing if there was food being eaten anywhere. Where there is food, there is Grace.

We are truly ecstatic about Gracie's good mood and her great progress. We continue to pray for healing and a good outcome on her EEG next week. Thanks so much for all of your prayers. We know they are being heard!

Lisa, Jeff, and Gracie

Sunday, December 28, 2008

Holding Steady at 1

Gracie had a more restful night and her mood this morning reflected that. She was still experiencing a little G.I. distress, but much less so than yesterday. She was more active this morning and was walking around on her own more. She becomes more and more steady with each day that she works on her walking. We see less backward falls and she is able to regain her balance more often when she does start to fall. She is still very proud of herself when she makes it from destination A to destination B. Jeff and I are pretty proud too.

Gracie did have one spasm again today during her morning nap. At least I think it was a spasm. They are becoming very light and I'm trying to decide if it is a spasm or just twitching, which she does quite a bit of when sleeping.

We traveled to Jeff's sister's house this afternoon for a Christmas get together. Gracie was extremely irritable during gift opening and a good part of the afternoon. We did discover that she loves ruffles potato chips (I know, I know, what am I doing feeding potato chips to my 16 month old who has to have blood pressure checks a couple of times a week. Chalk it up to a momentary lapse in judgement and the fact that it was the only way she would stop screaming.). Gracie finally fell asleep on Jeff's shoulder -- a much needed nap and woke up to have some spaghetti and meatballs. I think Auntie Kathy must have added happy dust to the spaghetti, as Gracie's mood changed dramatically. She was smiley, happy, and ready to explore and see what she could get into. She was very happy on the way home too.

The plan is to talk with Gracie's pediatric neurologist tomorrow and see where we go from here. I hope, hope, hope we can bring the steroids down a bit. They really make her moody.


Saturday, December 27, 2008

G.I. Distress and Can You Say "Moody"???

Gracie had a very restless night with G.I. issues and that continued into today. She was so miserable that we had her seen by a pediatric physician when she went in for her blood pressure and weight check this morning. We wanted to make sure there wasn't any blockage. They didn't feel that there was, but gave us some things to watch for. We also continued giving her stool softener to hopefully help the situation. We did have some results which has made for a more restful evening.

Gracie's blood pressure was much lower than what we usually see and her weight is just slightly under 32 pounds. We also measured her height today....2 feet, 11 inches. What a big girl! She is wearing 2T pants, and 3T and 4T tops these days. I forget somedays that she is only 16 months old.

The increased Prednisolone has turned Miss Grace into a very irritable, restless little girl. The only three things that make her happy are being held and bounced, eating, and watching TV. I have thrown my rule of only 30 minutes a day of videos/tv out the window and let her watch a number of videos throughout the day. I figure desperate times call for desperate measures.

As for spasms, Gracie had one very light one this morning when she was napping on me. So we are feeling that the meds are working.

Lisa, Jeff, and Gracie

Friday, December 26, 2008

More Meds - More Restlessness

We increased Gracie's prednisolone today to three doses rather than two. This has made for a very hyper and restless girl. The only thing she really wants to do today is be held and bounced. She did have 3 spasms this morning and thankfully we've seen none since.

Gracie is experiencing alot of stomach discomfort this evening. She is also too restless to sleep for more than a few minutes at a time. I think it will be a long night. Poor baby.

In the morning we will go to the clinic for a blood pressure and weight check.

Lisa, Jeff, and Gracie

Thursday, December 25, 2008

Merry Christmas

Merry Christmas to all. Gracie had a very good Christmas and only had 1 spasm today. We were ecstatic - what a great Christmas present. Tomorrow we will increase Gracie's meds - zero is hopefully just around the corner.

We travelled to my parents for the day to spend time with family. Gracie slept for part of each way. She did very well for most of the day, she showed off her walking skills, and was showered with attention from grandma & grandpa, aunts, uncles, and cousins. She even got to see and pet Gus, a new baby puppy that has joined the family.

Family did get to see Gracie's temper and how loud she can scream. An effect of the steroids. Diaper changing time is one of those instances. I'm getting pretty good at quick diaper changes. There were lots of smiles and laughs too.

We hope you all had a great Christmas.

Lisa, Jeff, and Gracie

Wednesday, December 24, 2008

Christmas Eve

Here it is Christmas Eve, the day before Jesus' birthday, and 42 days since we received Gracie's diagnosis of Infantile Spasms. A calmness and great optimism have settled in with me this day. I have always felt God's presence, I have always known He was listening to me, I have always known that He has heard all of our prayers for Gracie, but I think He had some lessens for Jeff and I in all of this, especially me. I have learned not to be such a control freak and to truly trust in Him. I have learned patience, I have learned that it's okay to cry, I have been reminded what is important in life. With these lessens and so many more learned, I believe that the healing of Gracie's IS is near. Gracie had only 4 spasms today. Two of them at 1:30 a.m. while she was having her night bottle (yes, we're back to night feedings - the steroids increase appetite greatly) and the other two this morning when she was napping on my shoulder. Whether or not I get my Christmas wish of a zero spasm day or not, I am prayerful and optimistic that a zero spasm day is close by.

I talked with Gracie's substitute pediatric neurologist today. The plan is to increase the prednisolone to three doses a day rather than 2. We really need to stop the spasms, so a medicine increase is the next step. I checked to see if we could hold off on increasing until Friday so that we could enjoy Christmas with family without worrying about increased mood swings, irritability, and restlessness. I was given the okay.

Uncle Mitch and Aunt Jeryl stopped by for a short time today and Gracie gave them a few shy smiles and demonstrated her new walking abilities.

Jeff, Gracie, and I went to the Christmas Eve service at Jeff's church this evening. It was beautiful. Gracie was as good as gold. She loved the music. Most of the songs were traditional Christmas hymns and songs that I sing to her at night when she is falling asleep. Perhaps she thought it was bedtime. Santa came to our house while we were at church, but Gracie wasn't too into opening presents. Perhaps she is wiser than her years and knows the true meaning of Christmas has nothing to do with Santa!! Hmmm, we'll test that theory next year.

To all who are praying for us, to all who read this blog, our wish is for you to have a blessed Christmas. Whether you are with family, friends, or spending the holiday solo this year, you are in our prayers.

All of our love,
Lisa, Jeff, and Gracie

Tuesday, December 23, 2008

The Countdown is Hopefully ON!

Let me start out this fine day with the number of spasms little Miss Gracie had. Well depending upon how you count them, it was either 5 or 2! Her first one of the day was followed by three very light spasms, so perhaps I could count that as one? Either way, the number has gone down and we're ecstatic!

We were expecting to increase Gracie's meds today, but needed a call from the substitute pediatric neurologist to evaluate the situation and advise. Our peds neurologist is out of town for the week. Well we never got a callback so have not increased yet, and although I'm not a doctor I would like to stay at where we are if we continue to make progress.

Gracie was very tired today, but restless. Her night was the same. She wanted to be held a good part of the day, especially this afternoon. My arm muscles are developing quite nicely. Gracie doesn't just want to be held, she wants to be held and bounced.

Gracie had a great success today. We have been working on how to get back to the floor to sit once we are standing. I've been working on this with her for a couple of weeks, but she didn't quite get it. Her physical therapist indicated that it was a harder concept for kids to get than pulling themselves up. It's especially difficult for Gracie because she is so tall, it's a longer way down to the floor. Well she did it today. Hands down, knees bent, butt to the floor. Success!!!! Mommy was so proud and I didn't hesitate to let Gracie know how proud I was of her. She smiled from ear to ear. Later when I was recounting the story to Jeff, she was again all smiles. Daddy gave his "thatta girls" too!

Last year for my birthday I told Jeff all I wanted was a baby. Gracie arrived just under a month prior to my birthday, I got my present. For Christmas this year, I would like Gracie's spasms to totally go away. Do you think I'm just spoiled enough to get my wish? I hope so.

To those of you travelling this Christmas, you are in our prayers for safe travels. We wish all of you a very Merry Christmas and know that you are all in our prayers. We also feel surrounded with love, prayers, support, and encouragement. Every day I hear of someone new who is praying for Gracie. We are so very blessed.

All our love,
Lisa, Jeff, and Gracie

Monday, December 22, 2008

Only 6 Spasms!!!

Gracie woke up way too early this morning, but after a restless night I think she was just done sleeping. We dropped daddy off at an eye appointment across town and she smiled the whole way. I think she was just happy to be out of the house. Then we came home, had a bath, and just hung out for the morning. I let her play in my pan cupboard while I worked in the kitchen a bit and that was a HUGE hit. Gracie continued to walk from here to there and her balance keeps getting better and better. She still has falls, but I'm noticing her being able to catch and stabilize herself at times when she would have fallen previously.

We went to the clinic for weight and blood pressure checks this afternoon. Her blood pressure continues to be good and she is almost 31 pounds. We stopped in to see Auntie Sheila for a few minutes as we waited for daddy. Then we zoomed to a Christmas party at Gracie's daycare. It was fun to see all the kids and meet some of the parents I hadn't met before. Gracie enjoyed herself too. It was a very fun party -- lots of yummy food, good company, and all the children were treated to Christmas gifts as well. We also got a beautiful 8x10 of pictures taken of was very cool.

As our title mentions, Gracie only had 6 spasms today. This is great progress. Tomorrow I talk with the neurologist (not our usual one as she is away on vacation this week, but a sub that also specializes in seizure disorders). The plan is to increase Gracie's meds from twice a day to three times a day. I fear the child will never sleep if we add another dose, but if that can make the spasms end, we'll do it.

I continue to see progress with Gracie's cognitive skills as well. She just seems to understand more of what we are saying these days also. She is really watching our mouths and plays alot with her tongue and sounds. I'm told this is a step on the way to speech development.

My wish for Christmas this year is zero spasms!

Lisa, Jeff, and Gracie

Sunday - A Few More Spasms

Gracie had about 10 of her normal spasms on Sunday. However, in the morning she was napping on me as we rocked and she had 7 or 8 very light rapid spasms right in a row. I'm not quite sure what that was, as we hadn't seen that before. Most of her spasms came in the morning and she had only two in the afternoon and evening.

She was a busy girl, but hyperness makes it very hard for her to nap during the day and sleep at night. She wakes up at least 10 times a night and as long as I'm right there she usually is able to go back to sleep fairly quickly, but is very restless.

She also waves her arms up and down alot very fast - I think she is just trying to expend some of the hyperness. She continues to move around alot and test out her walking legs.

This morning we've only seen one spasm, so we're hoping for a good day.

Lisa, Jeff, and Gracie

Saturday, December 20, 2008

Adoption Day Anniversary

Today was the first anniversary of Gracie's official adoption day - the day she legally joined our family. She joined our family and hearts in July 2007...and it became official a year ago today. We celebrated by giving her mom and dad's undivided attention. We laughed, we played, we walked, we had a good day.

Our spasms were up a little today. She had a total of 11 today. That being said, she spit out a good portion of her morning prednisolone, so I don't think she had enough in her to do what it needed to do. Actually, she didn't really spit it out, she let it collect in her mouth and then drain out the sides. She did much better with her evening dose and only had one after that dose. We'll see what tomorrow brings.

Gracie was on the move again today. Each day she gets a little braver with her steps and gets a little further from the security of something to hold onto. She's still losing her balance alot, but I'm also noticing that she is able to regain her balance and maintain a stand on more occasions. Practice makes perfect, as they say.

Gracie jabbers alot, but only has a few sounds that represent words. "Nnnnnn" means "no" and "nnnnmmy" means "food" or "nummy", today she was in her high chair and gave me a very clear "no" when I wanted to wash her face. She hates having her face washed. I think that may be the first time in my life I loved to hear someone tell me "no".

I'm noticing that Gracie's appetite is diminishing now that she is off of the ACTH. This is a good thing. We want her to lose a little of the weight she gained while on that.

Lisa, Jeff, and Gracie

Friday, December 19, 2008

On the Move!

Gracie had a good day today. I'm thrilled to report the spasms have decreased yet again and we only had 8 today! YAY! I talked with Gracie's neurologist today and she was very pleased to hear of Gracie's decreased spasms, but also to hear that Gracie is once again on the move. She wanted to walk constantly today....and by walk, I mean all by herself. At one point she took about 20 independent steps in a row. All very slow and deliberate. Otherwise most of her day consisted of pulling herself up on her V-Tech walking toy, walking circles around it, then to the couch, then to the V-Tech, then to the TV stand and back to the V-Tech again. She was starting to make me dizzy. She still takes many spills, or almost spills as I'm there to catch her. She did wear her helmet for awhile, but it does get warm so I give her breaks from it. At one point today she crawled to the door of her room and just head-butted the door with her helmet. I truly think she was testing it out.

Her cognitive skills seemed to be much stronger today than they have been in a while as well. She was teasing me alot today and we haven't seen her do that in a while. We also played alot of "Mommy's going to get you!" Where she crawls away and I crawl after her. However, she likes to be caught, so she stops every once in awhile and sticks her little butt out so that I can pat it. Once I do she giggles and then zoom she's gone again.

Afternoons seem to be her moody time. She just gets irritable and nothing is quite right. I do know her tummy was bothering her this afternoon -- yes, it was an antibiotic day.

We pray that the spasms will continue to decrease. If they stop by next Tuesday, we stay on the prednisolone at the current dose. If she is even having one a day at that time, we will increase the dose to three times a day rather than two.

The snow here was beautiful today. I felt like I was in a giant snowglobe. Wishing you all a great and safe weekend.

Lisa, Jeff, and Gracie

Thursday, December 18, 2008

Hyper Girl -- But Fewer Spasms

The prednisolone makes Gracie quite hyper so she has a hard time staying asleep. She tossed and turned and tossed and turned from 3:30 - 5:30 a.m. She finally got back to sleep and had a peaceful rest until about 8:00 a.m. She awoke in the best mood. This was great because she had a field trip to daycare today. Gracie spent a couple of hours with Barb and Michelle at daycare. They informed me they needed Gracie for a couple of hours -- they wouldn't tell me why. This is the season of secrets. Gracie was very happy to see them and had a good morning. She even joined them for lunch -- spaghetti -- one of her favorites.

We had fewer spasms today, I think last count was 10 or 11. Yay! I hope this is a sign that the meds are working. She took a couple of short naps this afternoon. 30 minutes on her own and 45 minutes on mom as we rocked. She is just restless enough that if I put her down she wakes up. I don't mind -- it's good snuggle time.

Tonight we saw the irritable Grace come out. She did fine for her blood pressure check and weight. She actually lost a couple of ounces and her blood pressure was good. Then we went for a blood draw and she did good for that too. The meltdown happened in the lobby as she did not want her coat on when we were ready to leave. I think she had just had enough! The lab techs commented that they have never seen her unhappy like that and were amazed that she had such a temper. We don't see it often, but when we out.

Hoping and praying for the spasms to decrease even more tomorrow. Or they could just disappear...we would certainly welcome that.

Lisa, Jeff, and Gracie

Wednesday, December 17, 2008

Prednisolone Wednesday

For those of you that read my battle of wills story from yesterday. Gracie awoke this morning at 4:30 a.m. and crawled over to the electrical outlet we had been battling over, touched it, laughed, and looked my way. That little turkey! Later this morning, she did crawl over to it, looked at it and didn't touch it, so maybe she is starting to listen to her wise mother!

We started out our morning with a trip to the Mayo Clinic pharmacy to pick up the prednisolone to start today. She takes it once in the morning and once at night. I can already tell it is making her hyper, restless, and we are seeing the beginning of irritability set in. That being said, she still had happy times today, many of them when she had a full tummy. She was very active today and with that comes a few bumps as her balance isn't quite where it needs to be.

Auntie Sheila stopped in for a quick visit and it was nice for Gracie to see and play with someone other than mommy. I enjoyed the visit as well.

We had fewer spasms today, I would estimate less than 15. We had only one tiny one tonight and nighttime is where we usually see quite a few. I'm trying not to get my hopes up too high, but will pray that this is the sign of the Prednisolone working.

Lisa, Jeff, and Gracie

Tuesday, December 16, 2008

Plan C

Gracie once again awoke in a great mood and was a busy girl this morning. She was very tired through the day (effects of the Vigabatrin) and took a number of naps. We saw fewer spasms today, under 20.

I talked with Gracie's pediatric neurologist today as we needed to come up with Plan C as the Vigabatrin is not working. With Infantile Spasms, you don't have the luxury of waiting long to see what happens, you need to try something and if it doesn't work, move fairly quickly to the next plan. Our goal is to stop the spasms before brain damage occurs.

Plan C is prednisone. Gracie will get fairly high doses of prednisone twice a day for a week. If the spasms continue, on week two she will get even higher doses three times a day. We will lower her dose of Vigabatrin, but will not discontinue it. We do get to discontinue her ACTH injections immediately as both ACTH and prednisone are steroids, so the endocrinologist has indicated that the prednisone will more than make up for the ACTH. We will continue monitoring Gracie's weight, blood pressure, and blood labs. She must continue taking the Zantac three times a day and the antibiotic (Bactrim) twice a day on Mondays, Wednesdays, and Fridays. She will also continue taking Topamax twice daily to manage her epilepsy.

We hope and pray that Plan C will work. We have Plan D waiting in the wings -- that would be to put her on the ketogenic diet. This would require a week stay in the hospital to get her started and a two year commitment to the diet. The diet is very strict and is 75% fat and 25% protein and carbs. I don't look forward to having to measure and weigh everything that goes in Gracie's mouth, but needless to say if that is the answer, we'll do it.

We tried out Gracie's new helmet today. She doesn't love it, but tolerates it. I think it gives her a little more confidence so she is a little braver and although I still follow her around, I don't feel like I have to be catching her at the sign of her losing balance, so she is actually learning to catch herself more often. The apron strings just got a little looser.

Gracie and mommy had a battle of wills today. Gracie is attracted to electrical outlets, we have replaced all of them in our house so that she can't be harmed by touching them, but I still want her to know they are not to be touched. Today she kept going for the one in her bedroom and would laugh when I would tell her "no, no" and remove her hand. Finally I just removed her from the area. This happened a second time, same thing, but I took her away from it and moved her to the middle of her bedroom. She was not happy about this and she immediately crawled out of her room into the living room and pulled herself up on the gate that is across our stairs that goes to the front door. She stood there and shook it as if to say, "I want to escape." She is a sweet girl with a strong will and strong streak of independence.

Please keep the prayers coming -- we would like to see success with the prednisone.

Lisa, Jeff, and Gracie

Monday, December 15, 2008

Busy, Busy Monday

Gracie awoke in a great mood and was a busy girl this morning. She only had one spasm the first hour and a half which gave me great hope. We usually see quite a few in the morning, but they did continue to increase throughout the day and our total was around 25. I will talk with Gracie's neurologist tomorrow to see what Plan C is.

Our first appointment of the day was with a pediatric cardiologist and we have now added him to our ongoing medical team. He was awesome and I continue to feel incredibly blessed by the great team of medical professionals that surround Gracie. The biggest concern with Gracie's heart is that she has a slightly thickened heart valve which is leaking. This needs to be watched closely and at some point may require a valve replacement or it may continue to be fine forever. The cardiologist did mention that this is quite a common finding in "syndrome kids". We will have another echocardiogram in 6 months to see how it is doing.

This appointment was at St. Marys Hospital, so after we were done Gracie and I went to the visitor cafeteria and shared a piece of Jello cake. YUM!!!! It was a treat for both of us. After a quick nap, Gracie's physical therapist came to our house but Gracie just wasn't in a very good mood to do much. While Sandy was here, the UPS truck pulled up and delivered Gracie's helmet, so she checked that out for size and it fits very well.

After a quick snack, it was back to the Clinic for a blood pressure check and a weight check. We are just under 31 pounds and her blood pressure was good. After all of that activity, Gracie was more than ready for bed tonight. Come to think of it, so am I!

Lisa, Jeff, and Gracie

Sunday, December 14, 2008

Sunday - More Smiles, Less Spasms

Gracie awoke with a tummy ache this morning. Things just weren't quite right, but as the morning progressed, she started to feel better and was quite active, playing with her toys, digging in her toy box, crawling around. She discovered the electrical cord to a lamp we have behind one of our rocking chairs. She delighted in mommy telling her "no, no". She loves to test me. While this might be frustrating to some, I love it. It tells me she has a mind of her own and some independent thinking going on - this will serve her well.

We took Gracie downstairs to the family room today where Jeff and I had put up the Christmas tree while she was sleeping. She liked the lights and needed to feel the ornaments and the branches. She was more enthralled with the fireplace. Another "no, no" that she likes to test me on.

Gracie's spasms totalled 22 today. That is less than we've seen in a few days and we didn't have any that were super strong. We had started to see them with head bobbing (this is not a good thing), but none of those today. YAY!!!! Tomorrow we talk with our neurologist to see what the next steps are.

Tomorrow we also have an appointment with a cardiologist at St. Marys Hospital. Gracie's echocardiogram showed a small hole in her heart called a patent foramen ovale and a small connection between the blood supply to the body and the lungs (called a patent ductus arteriosis). They also noted a slightly thickened heart valve. As I understand it these don't seem to be of great concern now, but need to be evaluated by a cardiologist and we need to keep a watchful eye on them. Gracie's physical therapist will also come over tomorrow to work with her. Then in the evening we have a weight and blood pressure check. I think it will prove to be a busy day.

Wishing you all a great week.

Lisa, Jeff, and Gracie

Saturday, December 13, 2008

A Day With Daddy

Gracie awoke in very good mood again today. She spent all morning and early afternoon with daddy while mommy was at her hair appointment and did some other errands. Gracie had fewer spasms this morning, but the numbers increased this afternoon and evening. Gracie's balance and strength continue to show regression, although her determination is as strong as ever.

It was in the high 30's today so that warranted a stroller ride. We put Gracie in her snowsuit and went for a walk. She loved every minute of it. There were places where the snow wasn't removed from the sidewalks which made a bumpy ride. From the look on her face and the squeals of delight, the bumpier the ride, the better she liked it. Gracie and daddy went running down a hill, with daddy pushing the stroller and making a crazy sound. Gracie was smiles from ear to ear. We also put her snow boots on for the first time and let her experience walking in the snow. The look on her face told us she just wasn't sure about this...then it turned to a look of not liking it at all. She finally had a few smiles as we coaxed her through the snow. She was happy when she got to the cleaned off sidewalk and driveway though. She looked so cute trying to figure out how to get her feet to move those big old boots. Amazing how fresh air can do so much for one's attitude and spirit. I think a day with daddy was pretty therapeutic too.

Lisa, Jeff, and Gracie

Friday, December 12, 2008

Friday - Oh So Very Tired

Gracie awoke in the best mood today. I was snuggling with her and she kept giving me kisses and laughing and had very few spasms. My hopes were high. We even ventured out to replenish our diaper supply. As the day wore on, we had more spasms and our mood changed as well. Gracie was oh so tired and her tummy was really bothering her. She took an hour plus nap and when she woke up she was restless and nothing seemed to comfort her other than being held and sung to, so that is how we spent most of our afternoon. She did fall asleep on me for awhile, so we rocked and let her rest.

Today I noticed that Gracie didn't have the strength or balance that she has had previously, I'm not sure if it was because she was so groggy and the meds can cause dizziness, or if we are starting to see her skills regress. I'm hoping it was just because she is so tired with the full dose of Vigabatrin. Time will tell.

Gracie did enjoy her bath tonight. She splashed a bit and had smiles. The tub seems to be a happy place for her. Ironically, when she was a baby she would scream and cry the whole time we were giving her a bath. I guess our baby is growing up.

We'll hope and pray for the Vigabatrin to kick in tomorrow.

Lisa, Jeff, and Gracie Good Girl

Thursday, December 11, 2008

Way Too Many Spasms

Gracie had an extremely restless night. She had many spasms throughout the night and was constantly moving. She awoke to more of the same. We had more today than we have for a long time and many were stronger than what we have been seeing. She was sitting on the floor when one hit and it was so strong it knocked her over. This prompted a call to our neurologist. I'm not sure if I've mentioned it before, but we LOVE our neurologist, she truly is great. We believe that the Vigabatrin is not working, however since we aren't at the full dose yet, we upped Gracie to full dose tonight and will continue through the weekend. If we don't see any improvement by Monday, we will move on to Plan C. We aren't sure what Plan C is quite yet. There are a few things our neurologist has to check out before Plan C is decided. She just came back from a medical conference where there was much discussion and presentation about infantile spasms. In the UK they are using large doses of prednisone with success. We may try this, but Gracie can't be on ACTH to start this and she still has injections to ween her off until January 2nd. There is a chance that the prednisone could replace the ACTH, since it is a steroid. Our neurologist will be touching base with Endocrinology (Auntie Sheila, could you please get your endocrinologists on this!) to see if this is a possibility. The other possibility is the Ketogenic Diet (75% fat, 25% protein/carbs) with a 24 hour fast for starters that is monitored in the hospital as it can be very stressful for little ones not to eat for 24 hours. We expect that Gracie will be pretty zoned this weekend on the full dose of Vigabatrin.

We also had a weight check, blood pressure check, and blood draws tonight. She didn't even cry for the blood draw, she put her thumb in her mouth and just winced through it. Same for her injection this evening...didn't cry, didn't need to be consoled afterward. I think she is getting used to all of this. Her strength just amazes me.

We were at Baldwin this evening and a nurse I hadn't ever seen before came up and asked me if this was Gracie. When I said it was she explained who she was and told me that Gracie was being prayed for on her prayer chain. It amazes me how many people are praying for our little cherub. I can't tell you enough how much we appreciate the prayers.

Lisa, Jeff, and Gracie Gumdrop

Wednesday, December 10, 2008

Busy Body Wednesday

Gracie was a hungry girl through the night. She woke up twice needing to be fed a bottle of soy milk (yes, she's a soy girl....cow's milk/formula has never agreed with her). She woke up this morning with smiles and spasms. I liked the smiles, I wish the spasms would go away. She did better today with the double dose of Vigabatrin. She still looked stoned, but she didn't let it stop her today. She was a busy girl, so busy that I can't leave her for a moment as she pulls herself up on furniture, but then loses her balance and falls backwards. (Needless to say my trips to the bathroom are extremely hurried, I never know where I'll find her.) She also did some solo walking today, which she initiated. She just decided that she didn't want to be by the couch anymore, so walked into the kitchen. Her steps are still very slow and deliberate and she did lose her balance once, but I got her back on track and she made it to her destination. She is so proud of herself when she can walk and pull herself up. She loves for mommy and daddy to tell her what a big girl she is too. She smiles from ear to ear.

Today was an antibiotic day, so her tummy was upset again today and even more so tonight. I'm still keeping an eye on her digestive symptoms, things still aren't working quite right.

Gracie's early education teacher came today to work with Gracie and they had fun with a light up cow and jingle bells. Gracie was very cooperative. I think she was happy to see someone other than mom.

We still had plenty of spasms today. We saw a couple of very strong ones again. The strong ones concern me. We are sick of calling them spasms and seizures so at our house we call them "hoogie boogies", which also makes Gracie smile. Her strength and spirit continue to amaze me, she tries so hard to be happy. When she's not, I know there is truly something wrong or she's not feeling well.

Love to all,
Lisa, Jeff, and Gracie

Tuesday, December 9, 2008

Double Dose

Today we doubled Gracie's dose of Vigabatrin. I was nervous about what effect this would have on her and well I was pretty much right on. It makes her very groggy, she crawls around looking stoned. I feel like this mean mom and then I remind myself it must be done for her longterm outcome. Sometimes it is hard to look past the here and now. Gracie wanted to be held and bounced a good portion of the morning, so we wore the carpet down a bit today. She did get excited when I let her watch her absolute favorite DVD "Signing Times - Volume 1".

After lunch Gracie took a three hour nap. I kept checking her to make sure she was still breathing. I sort of encouraged her awake after three hours. She wasn't the happiest girl to have to wake up. I was having a low energy day myself, so I slept for an hour with her. That felt good.

She was pretty groggy and more irritable this evening. She did enjoy her bath tonight. I hated to take her out of the tub because she was the happiest she had been all day. Right after her bath we had her injection and she didn't flinch or cry. I'm either getting better at these or she is just one brave girl and I'm thinking it's her being brave. By the way, for those that have read my earlier blog entries, I no longer cry after each injection either, so I'm getting a bit more brave myself. We still saw plenty of spasms today. Hopefully, tomorrow will be better.

Please keep the prayers coming. We are so overwhelmed by the prayers, support, and encouragement we are receiving from everyone. Please know we are so grateful.

Lisa, Jeff, and Gracie

Monday, December 8, 2008

Smiles, Smiles, and More Smiles

Gracie woke up in an exceptionally great mood today. Since we started the ACTH, she has just been a bear when she wakes up because she is sooooooooooooo hungry. Not today, she had been sleeping on the floor in her room and she just crawled out with a big smile on her face to welcome the day. Her morning continued much the same. She was happy, smiling, and extremely agreeable today. Mondays are usually more difficult because she has to take her antibiotic that she hasn't had to take for a couple of days. She even cooperated and sucked that right down. Hmmmm.

Gracie was a mover and a shaker today. Since we don't have her helmet yet, I just followed her all around, because she pulled herself up on EVERYTHING today. Once there, her balance doesn't always keep her there and she falls straight backward. Not a good thing for a tall girl with a head that doesn't bounce.

Gracie's tummy was acting up this afternoon, yet she was still quite mellow and moved around. We did get the results back from Gracie's stool samples and everything looks good there, so we were very relieved about that. We also had her blood pressure and weight check tonight. She is now 30 lbs. and 5 oz., and her blood pressure was up a bit too, but not terribly concerning.

Gracie had less spasms today than the last couple of days. Although she does seem to be getting stronger ones. I'm not sure what that means. Tomorrow we double her dose of Vigabatrin. I pray that we see the spasms continue to lessen.

We hope and pray that all of you needing to travel in this winter snowfall stay safe.

Lisa, Jeff, and Gracie

Sunday, December 7, 2008

Snowy Sunday

We woke up to a fresh snowfall and decided to see how Gracie would do for us in church this morning. We hadn't taken her since we started the ACTH. It went better than expected and she was a pretty good girl. Jeff did take her out at the end and talked a bit with the priest that baptized her. Father Tom gave her a nice blessing. As we left church the snow was coming down in huge beautiful flakes, it looked like feathers from heaven.

Gracie had a lot of spasms again today. I find that as we ween her off of the ACTH we are seeing more spasms. I truly hope that as we increase the Vigabatrin that they will start to decrease. We've been noticing a few "absence seizures" through the day too.

Gracie was in good spirits today. She played with her toys, as well as mom & dad. We read books, still one of her most favorite things to do. She loves to be read to and she loves to just flip the pages of the books on her own and look at the pictures. She did a little walking today and pulled herself up quite a bit. She's been bear walking quite a bit lately, it just looks so goofy. Her sense of humor was in full force today. We saw a lot of smiles and heard alot of laughter.

Gracie took a 2 hour nap today. I couldn't believe it. I layed down with her for a while. My energy level seemed to be at a low as well.

We continue to anticipate what this week will bring with us doubling Gracie's dose of Vigabatrin on Tuesday. I've been enjoying a few days of having her personality almost back to normal, so I don't look forward to the sedative effect that we have been told will probably take place.

Wishing you all a great week.

Lisa, Jeff, and Gracie

Saturday, December 6, 2008

Happy Saturday

We started out our morning by a visit to pediatrics at Mayo Clinic. Gracie had blood in her stool yesterday and with all of the meds she is on we can't take such things lightly. We are taking a number of stool samples to be checked out and we had some blood tests. All the blood tests came back fine with the exception of Gracie's white blood cell counts are way up, which could indicate an infection. She doesn't seem to have any infections that we can tell, so will watch that and the results of the stool samples may help to clear things up. We are also forcing fruits, veggies, and juices to make sure all is soft in that area.

Gracie's physician gave her instructions not to make mommy and daddy worry so much. Boy, did she have that one right.

Gracie had a very happy day, she played, she walked a bit, and pulled herself up everywhere. We are realizing we need that helmet to come very quickly as she becomes more mobile, we're having more and more head bonks as she becomes a little more confident. We pretty much follow her EVERYWHERE because we never know when she is going to pull herself up on a chair or couch and then lose her balance and fall backward.

We had about 20 spasms today, one quite violent when she was in her high chair that caused to her to move quite a bit. I was glad she was sitting for that one. I really haven't seen any improvement with the Vigabatrin, but we increase the dose again on Tuesday.

Enjoy your weekend.

Lisa, Jeff, & Gracie

Friday, December 5, 2008

Stronger Spasms

Today was not a great day for Gracie. The morning started out pretty good, we even went for a visit to daycare for about 45 minutes. I thought it would do Gracie good to see other kids and her daycare providers too. It does her good to get out of the house once in a while.

This afternoon her tummy was bothering her (it was an antibiotic day which always causes some G.I. distress) and we also discovered blood on her stools. The ACTH (steroids) can cause stomach ulcers so I made a call and talked with her neurologist's nurse. We are upping her dose of Zantac and will make a trip into Baldwin peds tomorrow to investigate the cause. Hopefully it is nothing.

Gracie's spasms were very frequent this afternoon and into the evening. She had a couple really strong ones that were very concerning to me. I also noticed some head/neck spasms that I hadn't seen before. I also think her balance and coordination were not great today. I'm hoping for a better day tomorrow.

On a fun note, Gracie really enjoyed her bath tonight. She splashed so much that she pretty much washed the bathroom walls. She even bobbed for her rubber duckies. That was hilarious to watch.

Please continue to pray that we can eliminate these spasms before they do any brain damage.

Lisa, Jeff, & Gracie

Thursday, December 4, 2008

Sotos Syndrome Confirmed

Today we met with a Medical Genetics physician at Mayo Clinic who confirmed Gracie's DNA tests came back positive for Sotos Syndrome. The DNA mutation is a new one that hasn't been seen, or at least, documented previously. Sotos syndrome patients have motor delays as well as learning deficiencies. Some need lifetime care and support, others catch up in mid-childhood and go on to lead productive lives and have families. Time will tell. You don't ever treat Sotos Syndrome, you just treat the symptoms that come up along the way. We have Gracie plugged into all of the special needs areas already -- early education, physical therapy, developmental and behavioral pediatrics, and of course neurology. We meet with our pediatrician in early January to figure out when to add speech therapy as well. We also had Gracie's weight checked, she is now 30-1/2 lbs. Her blood pressure was also a little higher than normal, but not too worrisome at this point. We were at the clinic from 9:30 a.m. until 1:30 p.m. Jeff, Gracie, and I were all tired.

Gracie's tummy continues to swell from the steroids and her voracious appetite. After our trip to the clinic, I made a trip to the store to buy her new clothes. Mostly smock type shirts so that she is comfortable. I felt like I was squishing the poor girl into her clothes. I'm told this will subside once the steroid injections are complete.

Gracie had a pretty good day. We're still seeing quite a few spasms, I just keep reminding myself that we are not at the appropriate dose of the new meds yet. We are slowly increasing them, so won't be at full dosage for two more weeks. We keep hoping they will be the answer to our prayers.

Gracie continued to say "mama" more today. This does my heart good!

Love to all,
Lisa, Jeff, and Gracie

Wednesday, December 3, 2008

Way Too Many Meds

Gracie has her everyday meds and then ones that she gets every other day and some on just M/W/F. Today was a big day. Four meds this morning and five this evening. She did quite well with all of these. I always dread the days she has to take her antibiotics, she hates them and they make her tummy upset. Today she actually cooperated and took them right down. Her tummy wasn't overly upset either. Yay. She also did not cry for her injection this evening. She just took it all in stride. I came over to give her a kiss afterward and I even got a big smile. She certainly knows how to make mommy feel better. I thought I was the one that was supposed to be comforting her.

Gracie had her follow-up appointment with ENT today for her ear tube surgery. Everything is looking great and we've had no ear infections since. I did mention that she is CONSTANTLY itching her nose and asked the physician to please take a look. He said it was quite dry and suggested some nasal gel. Will pick that up tomorrow as they didn't have any in stock today. I even run a humidifier in her room nightly.

Gracie had a pretty good day. She still had about 20 spasms, so we aren't seeing any reduction in those yet. It amazes me that every time we put her on new seizure meds she makes gross motor skill progress. Today she got in a standing position by herself from the floor. She pulled herself up on a low stool and then stood up directly from there and maintained her balance. This is huge for her. She also started saying "mama" with more frequency today. She has been pretty liberal with her dada's, but we don't hear the "m" sound much. I've been working on this with her.

Tomorrow we see the medical genetics physician and get more information about her Sotos Syndrome diagnosis. It will be interesting to see what he has to say.

Lisa and Family

Tuesday, December 2, 2008

We've Begun the Vigabatrin

Gracie had a fantastic morning and into midafternoon. She smiled, she jabbered, she walked a bit, but most of all she was happy to play and move around and even get into a little mischief. At one point I just sat back and watched her as she was happy go lucky and acted like a normal 16 month old (whatever normal is).

We started a low dose of Vigabatrin today and will stay on this dose for a week before we slowly start to increase it week by week. We were told that it would probably have a sleepy or sedated type effect on Gracie as she is pretty sensitive to these types of seizure medications. She actually seemed more hyper through mid afternoon and then she sort of crashed. She was very tired this afternoon, but wouldn't sleep unless I was holding her and rocking. She also became quite irritable at times, yet rewarded us with smiles as well. She seems to be able to go from happy to unhappy and back to happy again within seconds. It will be interesting to see what tomorrow brings. We also seemed to have less spasms today.

We have an ENT appointment to check Gracie's ear tubes tomorrow. With all that is going on, I sort of forgot about the tube surgery...that was the day she had her first of many seizures. On a good note, we haven't had an ear infection since!

Please keep us in your prayers for the Vigabatrin to be a success. We know many of you are hurting or have prayer needs as well. Please know that you are also in our prayers.

Lisa, Jeff, and Gracie

Monday, December 1, 2008

Moody Monday Morning & A Better Afternoon

Gracie had a rough morning. Her little tummy was not feeling well. I spent most of the morning walking and bouncing her. She started to feel better this afternoon and played with her books and toys. We had a fair number of spasms today.

Gracie's physical therapist, Sandy, came over this afternoon and Gracie showed her how she can walk. Sandy liked to see how Gracie is very slow and deliberate with her steps. She also commented on how much Gracie has improved with her balance and steadiness. She did witness a couple of her spasms and we both agreed that she needs a helmet in case she is walking when one of those hit. So Sandy measured her for a helmet and gave us the appropriate information.

The good news of the day is that the Vigabatrin (the new meds) arrived from Canada today. We will start those tomorrow and hope and pray for success. We will slowly work Grace up to the desired dose. One pill daily this week, two pills daily next week, and then on the third week, we'll do three pills daily. We have to cut and crush these pills.

Gracie had her weight and blood pressure checked this evening. She gained a few ounces, but nothing substantial. Her blood pressure was good as well. She was very smiley on the trip to her appointment. I think she was happy to get out of the house.

Lisa, Jeff, and Gracie

Sunday, November 30, 2008

Snowy Sunday

Gracie had a pretty good day today. She was a little more needy today and had a great appetite. She woke up at 3:00 a.m. and 6:30 a.m. demanding to be fed. Once fed, she went right back to sleep. We had smiles today, but not as many as yesterday. She wanted to be held and bounced more today as well. I know this is the steroids at work, they cause her to be quite restless. The number of spasms today was reduced from yesterday as well, but we still saw plenty of them. Thankfully, they weren't as strong as yesterdays. We did not do an injection tonight, so I'm a little nervous as to what tomorrow will bring.

Gracie did enjoy seeing the snow outside and watching daddy shovel from the window.

Lisa, Jeff, & Gracie

Saturday, November 29, 2008

Our Happy Girl Returned Today

We have reduced Gracie's steroid injections to every other day. Last night was the first day she didn't have one. We can tell the difference in her mood. She was a very happy girl today, her smiley, social personality started to return today. She played, she laughed, she sang, and she crawled about the living room playing with us and her toys. She even took two 30 minute naps. Unfortunately, the spasms returned with a vengeance as well. She had so many of them today that we lost count and some of them were so strong. Tonight we give her another injection, it will be interesting to see if that makes a difference in the number of spasms tomorrow. We need the Vigabatrin (new meds) to arrive from Canada quickly!

Our neurologist witnessed one of Gracie's spasms yesterday and commented how unusual it was that Gracie smiles after them. Most kids cry and fuss. The neurologist truly looks at Gracie as a unique individual and we really like that about her.

We had Gracie's weight and blood pressure checked today. She actually lost a couple of ounces. and her blood pressure was good as well. The nurse that took her blood pressure was awesome with her. Gracie has taken to crying and screaming when she gets her blood pressure taken, this nurse really worked with her to make her comfortable before she even began. It worked wonders. I am so thankful for all the wonderful nurses, physicians, clinical assistants, and other healthcare specialists that we have encountered. We are blessed.

Lisa, Jeff, and Gracie

Friday, November 28, 2008

EEG Results and Next Plan of Action

Gracie had an EEG this morning to see how well the Acthar (ACTH) steriod medication was working to eliminate the infantile spasms. Our pediatric neurologist read the EEG immediately and met with us directly after. We got good news and bad news. The good news was that Gracie's EEG did show some improvement. The bad news is that there was not enough improvement and it was felt the ACTH won't give us the results we need. Over the next month we will gradually decrease the ACTH injections and eventually we stop those meds. We will be putting Gracie on a new medication call Vigabatrin. It is not FDA approved in the United States, so we will need to have it imported from Canada. Since it is not FDA approved, our insurance won't cover it, so it will be out of pocket, but a small price to pay for Gracie's health. Like most medicines, this one will have some possible side effects. It will make her sleepy and perhaps a bit dizzy as well. It can also be toxic to the eye and can cause irreversible damage to peripheral vision if on it long-term, so we will be watching Gracie's vision very carefully and will have that monitored at Mayo Clinic as well.

We did get a confirmation through DNA testing that Gracie has Sotos Syndrome. We'll learn more about this later next week.

Thank you for the continued prayers.

Lisa, Jeff, & Gracie

Wednesday, November 26, 2008

Drat - More Spasms

Gracie had a lot of spasms today, I would estimate about 30. She didn't feel great today either. She wanted to be held most of the day and was very tired and restless. Due to Gracie's compromised immune system, she takes a very strong antibiotic twice a day on Mondays, Wednesdays, and Fridays. She absolutely hates taking it, even though it smells grape, and it makes her stomach upset. So I think that was a good part of why she wasn't at her best today.

She did walk a little today, but wanted to be held most of the day. We did take a stroller ride, but she wanted to lay back for it. Gracie usually hates laying back in her stroller, so I think laying must have felt good on her tummy.

The funny story of the day happened this morning. I had Gracie's pants off and had her sitting in front of me to clip her toenails. She hates having her toenails clipped and usually fidgets the whole time, pulling her foot away. Today it went extremely smoothly and I was just clipping away trying to get done quickly before her mood changed. I should have realized something was up. When I was all done, I noticed her chewing on something. Knowing there was no food around, I put my finger in her mouth only to pull out a SpongeBob bandaid. She had picked it off of her leg from her injection the night before and popped it into her mouth. No wonder she was so good, she had a mission.

Gracie had a nasty fall today. She was standing at the couch and lost her balance and fell backwards and hit her head on the floor. The sad part was I was right there, I just wasn't quick enough. I know it hurt and she kept holding her head. Poor little pumpkin. This makes me realize the decision to get her a helmet is the right decision.

Wishing all of you a very blessed and happy Thanksgiving. We are thankful for all the love, support, and prayers we have been receiving.

Thank you,
Lisa, Jeff, and Gracie

Tuesday, November 25, 2008

Walk, Walk, Walk

Gracie had her ups and downs today. She was very tired this morning, yet very restless. She did take a 45 minute nap while I was rocking her. She had about 20 spasms today, so we seem to be about the same as the last couple of days.

Gracie was a mover and a shaker today. Despite not always feeling wonderful, she decided today was the day to work on walking. She walked from our TV stand in the living room to the refrigerator in our kitchen. She stood there for a while and I coaxed her to walk to me and we ended up at the dishwasher. I would guess about 20 + steps in all. She walks very slowly and deliberately as she seems to understand that she still has trouble with balance. She is able to catch herself at times when she starts falling backwards, so that is a success as well. I think we are going to need to get her helmet sooner rather than later.

It was a beautiful sunny day, so I decided a stroller ride was in order. Instead of using the umbroller, which seems to be confining for Gracie when she is all bundled up in her snowsuit, I decide to get the big stroller from the trunk of my car in our attached garage. Whenever I leave Gracie in a room by herself for a few minutes, I tell her I'll be right back and not to get into any trouble. She always smiles at this. Today when I returned (I wasn't gone more than a minute or two), she had pulled herself up, wedged herself between a rocking chair and a magazine stand and was holding onto a floor lamp. She had a smile a mile wide when I arrived at the scene, that was until the lamp and her started to fall over. Mommy to the rescue on that one. The stroller ride was enjoyed quite a bit today. She even started to sing and kick her legs.

Once again, she was a very hungry girl. I can't seem to keep her filled up. I know this is the steroids at work.

This evening Gracie did more walking downstairs and is very proud of herself, of course mommy and daddy just beam at her accomplishments as well. The successes seem twice as sweet when we see her struggle for every one of them.

We continue to pray for a miraculous recovery. The EEG on Friday should give us an idea of where we are and next steps. We appreciate all the prayers and ask that you continue to keep Gracie in your prayers.

Lisa & The Family

Monday, November 24, 2008

Happy Monday

Gracie had a very good day today. Her mood was much more mellow for most of the day than it has been in awhile. I got alot of smiles and she had less than 20 spasms today. She even took about a 20 - 30 minute nap.

I took Gracie out for a stroller ride after lunch, but she didn't seem to enjoy it as much today. She kept wanting out of the stroller. The sun was out, but the wind was quite cold, so that may have been the problem.

We took Gracie in for a weight and blood pressure check this evening. She gained a 1/2 lb. and is now 29-1/2 lbs. Her blood pressure was higher than it has been, but she cried the whole time, so we don't feel it was accurate. She pretty much had a meltdown when they put the cuff on her and really didn't settle down after that. She screamed most of the way home. A nice meal helped to settle her down once we got home.

God Bless,
Lisa and the Fam

Sunday, November 23, 2008

Sunny Sunday

I am pleased to report that Gracie had fewer spasms today than she has had (less than 20). I hope, hope, hope this is a sign of good things to come. She had a very rough morning. She had a hard time waking up and once awake nothing was quite right. I spent the morning holding and bouncing her. She just sounded like she was constantly uncomfortable, but I'm not sure what hurt. If only she could tell me.

Gracie ate a good lunch and eating is one of her favorite things these days. She usually has big smiles when she is filling her tummy. After lunch, Jeff and I bundled her up and put her in the stroller for an extra long walk. It was a beautiful day (in the 40's) and fresh air felt good on all of our cheeks. We even heard laughter come from our beautiful little girl as Jeff pushed the stroller at a fast speed down the hill. She loves living on the wild side!

Gracie couldn't settle down at all to take a nap this afternoon. Oh I take that back, she did take a 2 minute nap. I'm not sure how refreshing that was though.

Auntie Kathy came to visit Gracie this evening and joined us for supper. We made one of Gracie's favorites - Bubble Pizza -- she had lots of smiles. After supper it was time for her injection and I could not get all the bubbles of air out. I tried for over a half hour. Our neighbor Bridget, a nurse, came to my rescue. If you are reading this Bridget -- thank you so much for taking time away from your family to help us out.

Thanks to all of you praying for Gracie. I know many of you are struggling through medical issues and other challenges. Please know you are in our prayers too.

Lisa and the Family

Saturday, November 22, 2008

A Stroller Ride in the Snow

We had a lazy morning and all slept in til 7:30 a.m. this morning. It felt great. When we looked out the window the outdoors was covered with a light blanket of snow. The sun shone brightly this afternoon and the temps were in the 30's, so I bundled Gracie up for a stroller ride in the snow. Once again, all was right with the world. She was quite fussy before we left, but the moment she felt the cool outdoor air hit her face her smile appeared and didn't leave her face until we were back indoors again.

She had quite a few spasms this morning, very few this afternoon, and this evening we are seeing a few more. Gracie had a pretty happy afternoon, took a 20 minute nap and another 6 minute nap. She stills gets tired easily, the steroids hype her up so she can't sleep much during the day, so she just takes little rests on mommy or daddy's shoulder.

We are seeing Gracie's attitude come out more and more, as she has started to scream at the top of her lungs if something isn't quite right. This is a new one for us, she's always been a very independent girl with her own opinions, but the tantrums were far and few between. With all she has been going through, I really can't blame her, I would want to scream too.

Gracie continues to have quite the appetite. She is getting picky on what she wants when though. This afternoon I offered her a graham cracker, she kept making her "I'm hungry" sound, but refused the cracker. There were pureed peaches close by and I finally figured out that was what she wanted. She also refused her blueberry waffle this morning, but a cinnamon roll hit the spot.

We're hoping for another nice day tomorrow.

Lisa & The Fam

Friday, November 21, 2008

Bummer -- More Spasms

Yesterday Gracie's spasms had decreased. Not quite true today. She had 20 before 9:30 a.m. This prompted a call to our pediatric neurologist as usually the steroid she is on makes them go away in about a week. Our plan is to continue with the steroid until next Friday. Gracie has an EEG on that day and immediately after we meet with our pediatric neurologist for results and to figure out where to go next. We have a few different options, one is we triple her epilepsy meds, the second is to order a different drug from Canada (not available in the U.S), but it can cause damage to peripheral vision, and third is to put her on a ketagenic diet - 75% of her food intake would be fat, 25% would be protein and carbs. As I understand it, we would need to be on this for about 2 years.

Auntie Arlene came to visit today. Gracie and Arlene played and Gracie had lots of smiles, she even danced and took a few steps for her. I think she was happy to have someone other than mom to play with. She fought sleep all day. She finally took a 30 minute nap at 4 p.m.

Gracie is starting to fight her injections. Can't blame her. I imagine her thighs are getting sore from all the pokes. Next is bath time. I'm hoping that will cheer her up. She loves to splash, splash, splash.

Lisa & The Fam

Thursday, November 20, 2008

Too Many Pokes!

Today we decreased Gracie's steroid injection to just one a day and we are doing it in the evening, so she was able to sleep in this morning. She had quite a good morning, even played on her own with her toys for a little while. This was a good sign that she was feeling a little better. We visited daycare for about 30 minutes and she enjoyed that, but screamed most of the way home as she was getting hungry and tired. This afternoon was not so good, just wanted to be held and bounced all afternoon. Couldn't quite get comfortable.

Tonight we had her blood pressure and weight checked. Her blood pressure was still lower than what it was in the hospital and she gained about a 1/2 lb. Then we had to have her blood drawn. Well she is a little sick of pokes and was not happy about this. It took quite a while to calm her down afterward. After that we came home, ate, and then had to do her injection. Tonight she did not want any part of it. It took us awhile to calm her down after that too. Jeff is the one that holds her, while I do the injection. I guess Jeff is the big "meanie" in her mind, as she didn't want anything to do with him for awhile afterward. They did make up and become friends again before bedtime.

Our good news of the day is that her spasms lessened. We saw around 20 of them today...we usually see about 40 a day. I hope this is a sign of good things to come. Please keep those prayers coming!

All our love,
Lisa, Jeff, & Gracie

Wednesday, November 19, 2008

The Dance and The Walk

Last night (Tuesday) Jeff brought home a DVD from a musical performance that he had worked the previous day. The musician was a folksy, reggaeish kind of guy and was really good (and this is usually not my kind of music) and Gracie quite enjoyed it as well. She was standing by the TV and all of a sudden she started dancing. She loves music...I see music in her future.

Today (Wed) Auntie Sheila came for a visit and took care of Gracie so I could run an errand. Gracie did quite well. She is either very happy or very unhappy, there really isn't much middle ground. I understand she did chew Sheila out with her jabbering. We're not quite sure for what though. The visit must have tired her out. She took a 2 hour and 40 minute nap. Virtually unheard of these days. Her naps have been more in the 5 to 15 minute range.

Evening seems to be Gracie's content time the last couple of days. This also means she is trying new things. Tonight she took five steps all by herself from the TV stand to her V-tech walking/learning toy. Each step was very deliberate and stable. I was so proud.

She continues to have many spasms through the day which is worrisome, but all of the progress she continues to make with her motor skills gives me much optimism.

Thanks for all the good wishes and prayers being sent our way. We know they are giving us strength and we appreciate each and every one of them.

God Bless You All.

Lisa & the Fam

Tuesday, November 18, 2008

A Stroller Ride

Gracie is napping, so thought I would take a few minutes to give an update. Gracie awoke at 5:00 a.m. hungry as could be. We couldn't get her bottle to her fast enough. She had a rough morning, lots of spasms, wasn't quite comfortable, and the only thing that really helped was for me to walk and bounce with her. She has liked this since she was a colicy infant. It's very calming to her and I'm building some massive arm muscles. Ha!

After lunch I called Jeff to get a reality check on whether my idea to take her outdoors for a stroller ride was really such a good idea. She loves the outdoors, but the high today is 31 degrees. BRRRR. The sun is nice and bright though and not too much wind. Jeff agreed that a little fresh air might do her good. I bundled her up in her snowsuit, hat, and she didn't even mind the mittens. I put her in her umbroller (she likes this better than her big stroller for walks) and with all that bundling she barely fit in. From the moment we hit the outdoors Gracie had a smile on her face a mile wide. She was kicking her feet in happiness and all was right with the world. We were out for about 45 minutes and she enjoyed every one of those minutes.

All the fresh air tired her out as well. Since the meds, the only way she will nap is with me holding her, well she is now on her bedroom floor snoozing. It's amazing what a change of scenery and fresh air will do.

Monday, November 17, 2008

First Blood Pressure & Weight Check

A quick update to let you know Gracie had her first blood pressure and weight check at the clinic this evening. She has gained 1-1/2 pounds and is now 29 lbs. I think she gained it all in her little cheekies. Her blood pressure was good, even a little lower than in the hospital.

Gracie had a pretty good morning, but an uncomfortable afternoon. Her physical therapist stopped by, but Gracie was not feeling up to any PT so we just talked a bit instead. Gracie did show her how her balance while standing is improving. We talked about getting Gracie a helmet for when she starts to walk, as I think it won't be that long and I can foresee lots of falls as she continues to perfect her balance. Gracie did take a number of steps for daddy tonight. The incentive...the TV set, she loves to stand right next to it.

The Diagnosis - Infantile Spasms

Family & Friends,

We've had a number of medical challenges with Gracie recently. The diagnosis of epilepsy, a clinical diagnosis of Sotos Syndrome (we are still awaiting the genetic tests to come back for confirmation), and our latest stay in the hospital has given us the diagnosis of Infantile Spasms. This is a seizure disorder if left unchecked can cause permanent brain damage and even death. We feel very fortunate to have caught this very early...we believe on day 2. We are treating this very aggressively with a steroid injection therapy. Our pediatric neurologist has indicated this drug is successful about 80% of the time. We aren't quite sure of the definition of successful at this point. We meet with the neurologist again and will get more information. I'm giving Gracie injections twice a day for starters, then it tapers down to once a day and then once every other day. This is a 12 week course of meds. The meds are very strong and can cause high blood pressure, liver damage, a compromised immune system, and stomach issues. Therefore we have appointments twice a week to check Gracies stats...chemistry, blood pressure, weight, etc. We also have her taking a number of other meds to assist with all of this. Gracie is also starting to puff up a bit from the steroids. We're told it will get worse before it gets better.

We have created this blogsite to keep family and friends updated on Gracie's progress. We ask for your prayers that the treatment plan be a success. Gracie's been a trooper throughout. She now preps herself for the injections by sticking her thumb in her mouth, grabbing her blanket, and wincing in preparation. Mommy still cries after each one, but I'm getting braver too! Daddy will take his turn with the injections once mommy has it down to a science and can teach him.

Gracie is much more restless and irritable, I'm told this is a side effect of the steroids. Her tummy gives her more trouble, and she has quite the appetite. Her smiles are a little harder to come by, but she still has them. She still has her sense of humor intact as well. Today I found her on the floor, laying perfectly still, eyes closed, holding up a bottle of water that was slowly drip, drip, dripping on her face. When I asked her what she was doing, I was rewarded with a huge smile. "Just playing, Mom!"

I'm off work to be with Gracie for a while. We'll see how it goes and if she starts to feel better once we reduce the steroid treatment, then she will go back to daycare. We're just taking it a day at a time.

We appreciate all of the good wishes we have received and appreciate all of the prayers - please keep them coming. We need them to beat this and our plan IS to beat this.

All our love,
Lisa, Jeff, and Gracie